CompletedNot Applicable

The Dystonia Coalition Natural History and Biospecimen Repository for Isolated Dystonias

United States3,265 participantsStarted 2011-01

Plain-language summary

Dystonia is a disorder characterized by excessive involuntary contraction of muscles with repetitive and patterned movements. The isolated dystonias are the most common type of dystonia and include Limb dystonias (like writer's cramp), Cervical dystonia (spasmodic torticollis), Laryngeal dystonias (like spasmodic dysphonia), and Craniofacial dystonias (like blepharospasm). The purpose of this study is to create resources to help learn more about the isolated dystonias, myoclonus dystonia, and dopa-responsive dystonia and to develop and validate various dystonia rating scales.

Who can participate

Age range18 Years

SexALL

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AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria: * Diagnosed with isolated dystonia or myoclonus dystonia or dopa-responsive dystonia * To be included in laryngeal dystonia group, nasolaryngoscopy (voice box exam) must have been completed to confirm diagnosis (this voice box exam is not part of the study) Exclusion Criteria: * Any evidence of a secondary cause for dystonia (other than myoclonus dystonia or dopa-responsive dystonia) * Less than 2 months since last botulinum toxin injection * Inability to provide informed consent * Significant medical or neurological conditions that preclude completing the neurological exam * Significant physical or other condition that would confound diagnosis or evaluation, other than dystonia or tremor

What they're measuring

Observational

Timeframe: 7 years

Trial details

NCT IDNCT01373424

SponsorEmory University

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2020-09-30

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